I'm not really sure what I'm looking for, but felt like typing this might somehow make something better.
I'm late 30s, single, only child, single parent, no other family left alive. My mum was diagnosed with stage 4B ovarian last August. She's done chemo (CA 125 down to 6), and debulking. She's now on avastin. Nothing in her liver but nodules in her lungs that shrunk a little with chemo. As far as I understand that's the only cancer in her at the moment. It's not BRCA related.
I'm both practical and emotional, but after the first appointment where I cried she's asked me not to go to any appointments and is going by herself. She's dyslexic and obviously emotional so it's sometimes hard to understand information and what's happening. I don't want to ask because then I cry and it upsets her, so I'm doing positive things and trying not to probe and ask horrible questions.
I tried to talk to the Macmillan nurse but it wasn't a very helpful conversation. I don't entirely understand all of the terms no matter how many months I've spent reading things online and trying to understand, and I can't seem to understand things like--
- she gets 18 sessions of the avastin and then the tumours will immediately start growing again? why is only 18? what if the side effects are too bad, does she stop and they start growing again?
- how will things progress? what are the options? she's sworn she's not having any more surgery and I understand that, but I don't understand what's next?
- what could I do to make sure practically and emotionally she's supported? She's always been the stronger one out of the two of us (I suffer from anxiety and depression and have most of my life)
- what can I do practically and fiscally to make sure everything's protected and secured so we don't have to worry or make horrible decisions as things progress?
- how do I know how fast they're going to grow? how do they kill her? how do I make this less bad?
- what if she's only doing this because she's worried about me being left alone?
She's currently living by herself and her energy is depleted and she aches a lot but she won't tell me things because she doesn't want me upset. It once took her and my nan an hour to explain to me that my granddad had a life altering stroke because neither of them could build up to it. I normally have to be the practical one but I can't be it without getting upset. It was easy with nan because she was 92, but mum is only 67 and she's all I have in the world.
I'm sorry, I'm just not sure how to navigate any of this?
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sasissad
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No need to apologise! This is an awfully difficult situation and you have lots of emotions to process, it’s all so painful, I can completely relate. I am a similar age to you and trying to navigate my mum’s stage 3b diagnosis and treatment. I have also struggled with very bad anxiety.
First of all, it’s really great that she has had successful debulking and chemo has drastically reduced ca125, this is really positive, try to focus on this if you can. When I was in my darkest time of worry, I was prompted to look at the here and now instead of the what ifs. The what ifs are never ending and a negative cycle - all with scenarios that may never even happen.
I have cried daily at one point, let it out! Give yourself space and time for this, and hopefully you will feel stronger around your mum. From my experience, the more I have understood medically, the better. Some things have not been ideal or nice to hear but personally I would rather know so I can process and accept, rather than spiralling with questions. I wonder if it might be helpful for you to attend some appointments, if you try to explain this to your mum beforehand?
On your point about support, I know it’s hard to be there for someone when you are feeling fragile. Do what you feel you can, keeping things positive as you said, the small things like just sitting and watching her favourite tv show or having a coffee together. If she needs support at home, district nurses/the council may be able to offer this but you’d have to check with her GP. I got my mum a wheelchair and shower seat through the council, they were surprisingly really helpful. Regarding financial support, there are lots of benefits she may be entitled to, macmillan were really helpful in explaining all of this and took care of any applications, it’s definitely worth asking about this (they have a separate team for finance).
I know there are so many questions, many unfortunately no one can answer but speaking as an anxious person, so many are also just sheer torture of thinking the worst. Give yourself some grace and you are stronger than you think!
Thank you so much for taking the time to reply. I've read through your other posts and can see your situation is close to mine as well. It means a lot to hear from someone who really understands what I'm going through. This situation has been so tough, and it helps to know I'm not alone in feeling this way.
I appreciate you pointing out the positives in my mum’s treatment. Focusing on the successful debulking surgery and the reduced CA125 levels is something I'll try to do more. Your advice to stay present and not get lost in the endless "what ifs" is something I really need to keep in mind.
Your words about crying and giving myself time to process my emotions hit home. It's good to know that it's okay to let it out and that it can actually help me be stronger for my mum. I also agree with your approach to understanding her condition better. Attending appointments and getting a clearer picture could really help me cope.
I’m grateful for your practical tips, too. I'll look into the district nurses and council services you mentioned, I don't think we're quite at that point yet, but I want to know where to go and be prepared when we need it. Your experience with these is really helpful.
Thanks for reminding me to give myself some grace and for saying I'm stronger than I think. Your offer to chat is really kind, and I might take you up on that as I navigate all this. Your message has really lifted my spirits.
I’m so sorry to hear about your mum but it is good news about her surgery and CA125. My 41 year old daughter was diagnosed with Grade 3 High Serous Ovarian Cancer last year. She has shown no evidence of disease (NED) but she had a contrast scan yesterday and we have to wait a week for the results. Like your mum she doesn’t want me to attend appointments with her as she says she then worries about me rather than concentrating on herself. I have used the on line MacMillan support extremely helpful as they answer all my questions (make sure you select the clinical nurse option and not general support). They keep your details so you don’t have to explain everything each time you call. Ovacome are also amazing and hold support groups for loved ones as we do need support. I spend a lot of time researching and relaying this to my daughter which she appreciates. It’s a terrible time for us all but my mum used to say “we only have today” which we do and we need to make the most of “today”. Wishing you love and take care of yourself. Xxxxx
Thanks for this, it's so difficult and I really appreciate you responding. I think I made the mistake of going for 'general support' and really didn't find them very helpful at all, but I suspect that's because I wasn't focused on what I needed.
Fourbytwo93 have provided a great reply. Let it out and cry when you’re at home.
Is there anyone else who could accompany your Mum to her appointments as she currently finds it too difficult for you to go with her?
MacMillan can provide counselling and advice on benefits, finance and a range of practical matters.
Your Mum is doing great. Her CA-125 is at the low end of normal range, she has got through major surgery and chemo in less than a year. That’s hard physically and mentally, she’s bound to have low energy at times, aches and pains from surgery and possibly neuropathy and other side effects from chemo.
Nobody knows how the disease will progress in your Mum. My advice is to try an avoid ‘Dr Google’ as much as you can, give your Mum some time without asking medical questions. Spend time together doing things you enjoy as a family. Be there for your Mum but remember to take care of your own health and wellbeing as well.
Thanks for the advice, it's really helpful. And for taking the time to reply.
Maybe I need to reach out wider to see if someone else can go with my mum to her appointments. I hadn't thought about MacMillan for counselling and financial advice, so I'll check that out.
It's good to remember that my mum is making progress, even if she's still dealing with side effects. I'll try and focus on spending quality time with her without asking too many medical questions. <3 x
Firstly, you've already done something very positive in reaching out on here for support. I'm so sorry to hear what a difficult situation you & your mum find yourself in. Life definitely throws a lot at us!
Lots of really helpful support & suggestions in replies already & I hope they give you some hope going forward.
Do you feel out of control in this situation? If so, that is a very anxiety provoking emotion in itself so its not surprising you are trying desperately to find all the answers. Perhaps ask your mum what WOULD be helpful for her. If you can gain back some control & be proactive in another way, you should both feel better.
None of us have all the answers as to what might happen, we can only take each day at a time. Ovacome have a family & friends group and you can go to a local Macmillan centre yourself, they will have come across situations like this before.
Keep focused on what you can do & be kind to yourself. We are all only human & its such a stressful time anyway.
I am sure your mum loves you as you do her, so try not to take it to heart, your mum will be struggling.
Does your mum have a friend or neighbour who could take her to appointments, take notes & share them with you?
You sound like a caring daughter who is trying to do your best, I hope you find a way forward & keep reaching out.
Thank you for your kind and supportive message. It really helps to hear from someone who understands.
I do feel quite out of control in this situation, and it’s definitely making my anxiety worse. I think asking my mum what would be helpful for her is a great idea. If I can find ways to be proactive and regain some control, I think we’ll both feel better.
I appreciate the reminder that none of us have all the answers and that taking things one day at a time is important. I might visit a local Macmillan centre, but I'm not sure if I'm okay enough to be in that space. I can be a grumpy and prickly person when I'm upset! Although they’ve probably seen situations like ours before and might have some good advice.
Thank you again for your thoughtful message. I’m trying to do my best, and your support means a lot.
Bless you, I'm only too happy to help if I can. You are right about Macmillan, they will have met people in all kinds of situations and will be just as welcoming to you. You could always explain what you've just said to me, so again, you're feeling in control of your experience.
Its hard when our minds go round in circles and can only focus on what's wrong, in my experience, picking out one or two of those things & focusing on what you CAN do always helps in some way. I've had to do alot of that during my six months of cancer treatment. Let us know how you both get on, & remember your worth & that you really do care, you wouldn't reach out for support if you didn't
I am sorry you and your mum are going through this. I thought it might help if I shared my experiences, as they are similar to your mum’s.
I was 70 when diagnosed with stage 4b ovarian cancer in 2020. Because I had still some fluid in my lung, I didn’t have surgery after 3 chemo infusions, which seems to be the norm, but had to wait until the end of that course of treatment to have surgery. I was on Avastin for a year, which I believe is the maximum time you can get it in the UK. I had very painful shoulders and arms when on the Avastin which painkillers and physiotherapy didn’t help. My oncologist asked if I wanted to come off the Avastin, but I persevered and my CA125 was down to 3 when I finished. I then had over a year without any treatment before my CA125 began to rise again and a scan showed the cancer had spread to other areas. I had another course of chemotherapy, which succeeded in shrinking them, and although BRCA negative, I have been on Niraparib for 18 months, with few side effects, and I am enjoying life. My journey seems to have started in a similar way to your mum’s, and while everyone’s experiences and reactions are different, perhaps it will give you hope.
With regard to your mum preferring to go to her appointments without you, try not to be upset by this. I like to have someone with me, but lots of people prefer to be on their own. The oncologist will send a report to your mum’s GP and perhaps she might let you go with her to an appointment there where her GP might be able to explain to you both what the report says. Or perhaps if she doesn’t want this, you could visit your own doctor. He won’t be able to discuss your mum’s case, but might be able to explain in general terms, reassure you, and treat your own anxiety.
My advice would be not to try to look up things online. Try MacMillan again, I think you were unlucky last time to speak to someone who was unhelpful, and ask them to explain if they say something that you don’t understand. This is also a great community for advice and there’s always someone who understands, so don’t hesitate to ask questions on here too.
I hope your mum benefits from the Avastin and can cope with the side effects. It’s worth it in the long run. And take care of yourself too.
Thank you so much for sharing your journey with me, it really helps me to understand how things can progress, and while I know it's not exactly how things will for my mum, it just helps to understand and help me comprend what's going on.
She's feeling a lot perkier today which is really good, I think a lot might be she keeps pushing herself to do more all of the time, I caught her laying a roll of turf the other day, but then she had to sleep for a day because she was so exhausted and in pain!
Your advice about respecting my mum’s preference to attend appointments alone and seeking support from her GP or my own doctor is really helpful. I’ll definitely take that on board.
Thank you and I hope, uh, I'm not sure what I'm supposed to hope, but thank you for replying x
Hi. You’ve gotten some good advice here. Try not to get ahead of yourself with worry. Many of us like be much longer these days, but have serial bouts of recurrence and chemo. I’m on my third and nothing has been so rough as frontline. It is hard to have your child cry in the beginning because One is feeling like the focus should be on oneself. But time has passed and maybe you can try harder to control your emotions and your mum can appreciate your help more now. If you could join a caregivers’ support group you could let out your feelings and learn more there. The most important thing is for you and your mum to stay connected.
Thanks for reaching out. Joining a caregivers’ support group sounds like a good idea to let out my feelings and gain more insights. I’ll look into that for sure. Thanks again for reaching out and sharing your perspective. It really means a lot. xx
My mum was diagnosed October 21 stage 4b high grade serous not BRCA. Following debaulking surgery she had chemo and Avastin. She tolerated Avastin really well but after 8 months her CA125 started to rise so they stopped it even though her scans were NED at the time. She had 6 months with no treatment before scan showed recurrence in lungs and liver and she started 2nd round of chemo. She tolerated this well and has now started the maintenance treatment Niraparib which I believe NHS prescribes for 3 years. She’s had a few issues with her platelets and has had to stop and start the Niraparib, dosage has been adjusted and we’re hoping it works for her and can be continued.
It’s such an emotional journey for all involved and I remember being very teary at my mums early appointments but this forum helped me so much and I have felt empowered with the knowledge gained from others experiences on here and less scared knowing there are more options for my mum. You really do have to live in the moment and take one day at a time and try not to let your thoughts run away with you. There are lots of ladies on here living full and active lives with a stage 4 diagnosis..
Sending love and best wishes to you and your mum xxx
Heya thank you so much, these examples really help me understand how it can plan out and that she's not going to be gone tomorrow. I think sometimes it just gets a little overwhelming. I also have trouble balancing needing to know more information so I can discuss these things with her, with hitting the dark sad corners of the internet! It really feels like this isn't one.
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